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Wonderfully Made…With a flaw?

A stylised image of a sapling in a triangle of soil I have a story about a tree that drastically changed the way I see myself and that helped me put my blindness into perspective. 

Back Ground

I was brought up in a family culture where, as children, we learned words from the Bible off by heart. There are some great verses, but one in particular was very disturbing for me. It’s in Psalm 139. A song written by King David, where he sings, “O Lord, You search me and you know me!” Then  he goes on about everything the Creator knows about him, which is really securing and comforting for me, until the part; “You knit me together in my mother’s womb, I praise You because I am fearfully and wonderfully made. Good grief! Did He know I had a genetic flaw in my ‘knitted’ flesh? How can a person with an inherited degenerative disease be ‘fearfully and wonderfully’ made? Is God a liar? Why is this not my experience? How can a supposedly loving Creator ‘knit’ me with an ingrained flaw? It’s not like my parents had any control of that. 

My Process

This was part of my identity struggle that I took years to put into words. I was scared of the answer in case I was deliberately created to have a factory flaw.  At some pivotal stage of emotional turmoil, probably triggered by some small incident or frustration of not being able to see, I got the courage to ask the hard question to get to the bottom of this. I literally said, “God, if you are alive and real and loving and you made me, then how come I got this disease? Show me, teach me.”

About a week later I was doing some gardening. I find that there is nothing quite as soothing as hard, physical labour that works up a sweat, for a person who is fighting within themselves, namely, me.  There was an area in our garden where nothing seemed to really grow well. It had full sun and got enough water and compost, so I was not sure why a special ‘birthday bush’ I had carefully planted there, had died! It was another symbol of a disappointment and an unexplained defect. We had previously planted a beautiful double-delight rose bush, specially transplanted from our previous home, there and it had also died. What was wrong with these plants?  Why did they not grow for me? The ‘injustice’ seemed to connect with something in my own story. I was upset and so decided to rip everything out of that patch. 

Once the dead roots of the little tree were hacked out, I energetically dug as deep as possible to get rid of this garden bed.  I was arm length into the hole when I came across some builders’ rubble, and a penlight battery.  It was rusted and leaky and had probably, inadvertently, been tossed out in a previous story of someone else’s life. I was so relieved to find the cause of the problem, it was not the plants that were defective , it was the soil. 

Buoyed with hope, I carefully scooped out another bucket of soil around where the battery had been. We added natural fertiliser and new soil. We went out and bought a beautiful leopard tree and planted it in that place. 

As I was working I had an ‘epiphany’ or, as Oprah would say, an ah-ha moment.  There was never a problem with the plants we had put there, it was a problem with the soil. I am ‘fearfully and wonderfully made’. There is nothing wrong with my spirit, the Jenny inside Jenny’s body. I am the plant and my body is just the soil, which happens to have 2 mutations in one gene. I am not my body, I am a spirit, with a soul in a body. What a relief! I found this revelation so profound, that it gave me a fresh foundation from which to look at my life,and my value as a human being. 

In Charge Versus In Control 

This incident scrambled my belief system, as I thought The Creator was in control of everything on earth. Well, now I believe, The Creator is in charge, but not in control. What is the difference? 

Have you ever been in charge of a project, and something goes wrong? Is it your fault? Is it helpful to blame? What action did you take to work with the situation? 

Just because you are in charge, does not mean you are in control. 

None of us are in control of ‘the soil’ in which we are planted. Our bodies, our skin colour, the families we are born into, are all part of the mystery of life. We did not choose our DNA, but we can choose how to respond to what we have been given. We may have been given an earthly ‘bad card’, but we can choose how to play it in a way that positively contributes to the next generation. As for the factory flaw, that was never in the mind of The Creator, it was a weakness in the soil, the genetic material from generations past – that part of us that returns to dust when we die.  

It’s been hard for my parents, who have had to face the reality of passing on a mutation, even though they had no idea it was there. We all have genetic mutations and idiosyncrasies. Even a perfect human specimen is not more valuable than one who has come through illness or accident with a lasting impact. It is the sacred, human spirit, the part we call life, that carries value. 

My conclusion

Cane and able

Cane and able … not the story of the original rival siblings, but one also involving pride and internal conflict.

I recently had an unexpected trip to Johannesburg. There was little time to prepare during a busy day and , it was only when my husband and I were standing still on the ‘skellylators’ (our family word for escalators) that I began to think about this trip – body still and mind begins to move.

I realised that I was traveling alone. No securing husband, just me and my faithful, rather battered white cane.

Usually, when I go on a solo adventure, I mentally visualise the places I am going to and the colors of shops, the landmarks and the likely course of action. This time I was just there unexpectedly and had to ‘go with the flow’. When I feel vulnerable I make an effort to embrace my weakness and know that I am never alone. God is with me always. That morning I read from an ancient letter, “Let your gentleness be evident to all, for the Lord is near you …and the peace that passes all understanding will guard your heart and mind” . Boy I needed that peace, so decided to just be gentle and ask whoever I met whenever I needed it.

I checked in online, but went to the counter anyway to find out which gate I needed to find for boarding. the lady asked if I needed assistance and I automatically said, “no”. The thought of sitting in a wheelchair when my legs are perfectly healthy seemed like a false pretense. (Will think more about this for the future). I also enjoy the adrenalin rush of finding my own way.

I would never travel without my mobility cane. Whilst it is a symbol of blindness and someone needing help (why din’t I get the assistance offered?) , it frees me to do stupid things and to ask stupid questions like, “ is this gate 7?” Whilst standing under a bright blue number I also get into unexpected conversations with interesting people I would otherwise never meet.

I became very aware of the surroundings for future reference. For example, in the SA airports the bathroom signs are round and bright yellow. I still can’t see which one is for who (although our law allows you to choose your gender anyway) and could not distinguish the disability one. My cane gave me permission to ask for directions to the disabled loo. Some folk falter before answering, thinking that this is only for wheelchairs (I had this conversation in the queue with the girl who had directed me earlier) , but can you imagine being in a large noisy bathroom with sounds of hand dryers, flushing loos and intercom announcements and trying to hear which door has opened and which cubicle is free. The disabled loo – which is probably very able (unless it is blocked) – is either free or not . A much simpler option for the vision impaired.

When joining a queue for boarding I looked for the brightest bag or shirt and tucked myself in behind that person. As long as they kept moving in the direction I needed to go, I was fine. At one stage the blue bag that I was following had to veer left to board through the front door of the plane and I had to veer right to board from the rear door. I walked slowly until I spotted another colourful blob to follow. (I think he was quite amused when I asked him if I could follow his bright shirt.)

There might come a day when it becomes too stressful to follow moving blobs and blurs of landmarks, but until then… my cane makes me able.

Design de-sign

I love entering an environment that is so cleverly designed that you feel safe and clearly directed, as if an usher were guiding you. Colours, light and acoustics all play a role in how a foyer or room makes you feel. I am not sure if sighted folk are aware of the subtle influence or whether I have just become more cognisant of these elements as my sight has deteriorated.

Recently I went to an exhibition of the final interior design students at the BHC building in Cape Town. Entering an unfamiliar building is always a bit stressful for me, especially on a bright, sunny day, as my eyes take a while to adjust to the new lighting leaving me totally blind for a few minutes – hence the white cane.

On this day, the well lit entrance eased me into the foyer where I was greeted, not by a butler, but by a wide yellow walkway that immediately surprised me and filled me with joy…. maybe a yellow brick road association. The pathway (if that’s what you call it in an indoor setting) began wide and seemed to gather us up and then, it’s flowing lines swayed us towards the front desk. The colour even continued up the desk creating a sense that it was awaiting our greeting. In theme, it was in fact attended by a very sunny lady welcoming us to enjoy the exhibition. At first I couldn’t work out why I felt so safe in a new space . I love the folk I was with and was celebrating their daughter’s talent (who was named top student the following day….brag, brag), but I don’t think I have ever found an unknown space so low vision friendly. The design of the flooring actually guided us along unconsciously … clever, social engineering. I love it.

This kind of design would be so useful for something like a customer service desk in large retail stores. Many people don’t read actual signs, but look for simple pictorial or visual cues to direct them. I love buildings where the tiles, doors and walls are an indication of where to go. Having only peripheral vision, I am very aware of this, especially in places where there are a lot of people moving in different directions … like auditoriums and bus stations. I feel less stressed when the way to a specific place is marked by the change in tiling or denoted by planter boxes or benches. Airports are my favourite (when they are designed well). Large groups of people form all languages and cultures use non-verbal clues as they find out where to go. I love it when there is a tastefully demarcated corridor from the disembarking shute to the conveyer belts where your luggage gets belched out and then the tiles lead you towards the exit.

There is a particular part of a shopping centre in Cape Town that exhausts me, even on quiet days. The floor is so intricately patterned and the lights so busy, that I detour to avoid it completely. If I was a kid in that space I would play up and have a tantrum from sensory overload. My tolerance for shopping has short-circuited there twice. My family know about it so when we walk past there I just pull down my dark glasses from their almost-permanent perching place on my head, whip out my white cane and hold onto the nearest volunteer tricep until we get to a place where they can see the serenity of the clear line between the floor and the wall.

I know that music and temperature subconsciously affect a person’s behavior, but until recently I had not noticed the impact of the visual cues.

In these modern times I know there are certain standards for buildings being ‘accessible’ for persons with disability. There is wheelchair access, being the most important (cos you have to at least be able to get into the building), but I do think there is a lot more that can be tastefully done for making spaces more friendly for low vision folk. This would also include seniors and those with mental challenges who also like to get around as independently as possible.

I really appreciate thoughtfully decorated public spaces that keep people moving in the right direction or waiting patiently with the least possible stress.

Well done to the designers who have achieved this. Like the interiors, they are not just pretty facades, but clever subliminal experts.

I am going …what?

Spectacles on a lap top

Photo by Jesus Kiteque on Unsplash

I am going … what?

It’s hard to fill in the blank in that statement, ‘I’m going …’. The shock of hearing that you have a degenerative eye disease is enough to make you think you are dreaming.  Thoughts waft through your semi- conscious brain saying, “This is not happening to me“; “this only happens to people I don’t know “ or “I will wake up tomorrow and find out it was just a bad dream”. That word ‘Blind’ is terrifying to a sighted person.  And so begins the first stage of grieving – denial.  I love denial. It is like having permission to live in the cuckoo land of unreality. It works so well … at least for a while.

I was in denial for years as I pretended and found tricks and clever ways to disguise the fact that I couldn’t see well at all (understatement!), and I let the submerged fear out by running and running and running some more .  In our own time we all go through the grieving process as anger comes short on the heels of denial (thumbs up to all loved ones who stand by us through that!).This is generally followed by fits of bargaining with ourselves and God or both – a good time to take up a contact sport.

I found myself faced with questions about the value of my life that no ten-year-old should have to ask.  Now that I think of it, no one did ask for blindness – that treacherous ocean between sight and no sight that all VIP’s (visually impaired people) are forced to navigate. You have no choice about being there and as much as people are with you, they cannot extract you from the reality. It can be a lonely and also selfish time. The currents of depression, disappointment and self-pity threaten to suck you under and pull you along paths you don’t want to go, but eventually the acceptance spits you out and you can finally take a deep breath of relief and joy as you recognise that you are still you and will always be you!  You realise that you are okay, and when you wipe the salt out of your eyes you see, or rather, hear a whole community of thriving survivors cheering you on and suddenly you know you are not alone and it is not a shame to get help… it is actually fun.

Find something that makes you tick and get involved, whether it is using your talents for fundraising for cures, awareness for prevention of blindness, support groups, sports, writing or motivational speaking. Your life itself can be a motivation and an eye-opener to others. If you have a degenerative disease you will go through more grieving, but there are plenty of people and great organisations to help you thrive.

Let’s do this together.

…teh wood for the trees

can't see teh wood for the trees

You are probably very familiar with the full saying, “You can’t see the wood for the trees”, where you are so busy looking for the solution everywhere else that you are blind to the fact that it is right under your nose… like looking for your sun glasses and all the while they are on top of your head, or in your top pocket.

Well, I was looking everywhere for a magnifier App that could be used to zoom in on a piece of paper and lock on the page… so I could write on the line without the camera focusing on your hand or the pen.  I have spent hours searching , downloading ,and  at times buying Apps only to find out that it has been in my hand all this time…. built in on  my iPhone. If the magnifier was alive it may have bitten me on the nose.I am so excited about the journey of discovery. I would love to meet the clever person or team at Apple who created this awesome technology and left it in a treasure box so some unsuspecting visually impaired person would come across it and think it is a miracle sent from heaven!

Being a teacher at heart I now need to increase my skill on this function and then lay it out simply so that it can be taught to others looking for specific help with magnifiers.

….forget the trees, I have found the wood!

 

Where’s Wally?

This is a brilliant read for young kids and parents to bond over. If you have never read a ‘Where’s Wally?’ you have a missing link in your education. It is this little guy in a red and white striped top who is hidden in plain sight amongst people and objects of similar colours and shapes.  It is a lot of fun in a book, but not a concept that transfers meaningfully into the real life of someone with little or no central vision especially when it is inadvertently left unedited in your pathway.

I am talking about hidden levels and camouflaged steps accidentally abandoned in public spaces and even in modern constructions.

There are three buildings I have been in quite often lately and all of them are specifically for children, the sick or the elderly- two hospitals and an education centre.  I love the modern sleek designs, the gentle greys and muted stone hues that are earthy and relaxing. ..except on the stairs! When you intend to go on a trip , this is not really the kind you meant.  And, the ‘landing’ between stair cases, I don’t think was named implying a safe foundation where something generally considered  dangerous comes to an end…like an airport runway or the mat at the other side of the gymnastics vault. A stairwell landing should provide maximum safety for ascent and descent. In all these cases there is either no contrast colour for the edge of the step or a dull grey that is the same colour as the shadows on the steps, making it confusing even for the sighted.  (In one case the stairs double as the fire escape route, not making for a quick safe escape.)

When you think of having an access friendly building, one usually thinks of a ramp and a wheelchair friendly bathroom and occasional braille bumps on the lift buttons.  It is very seldom that the needs of a low vision person, or a very short-sighted senior , are taken into consideration. Colour contrasts, clear lighting and tastefully bold signage can easily be incorporated into the theme of the build.

When these aspects are short-sightedly (excuse the pun) excluded at the design phase , the afterthought can land up being a thick yellow or white  stripe sloshed on the edge of the step that looks unsightly and out of place and frankly ugly! And then, it is sometimes blamed on the unfortunate needs of the disabled.  I feel sorry for some of these beautiful, elegant   buildings as they nervously await an unavoidable desecration. Some steps are clear at only certain times of the day when there is a shadow on them.

There are so many attractively clear stairwells where the light catches the minimalistic shine at the edge because it was planned with high visibility in mind.

I think Wally would agree with me as he too wears  a large pair of black- rimmed spectacles, but  I get so passionate about this; I may need to watch my step!

Love, loss and Levi jeans

There is nothing more relaxing and calming than putting on your comfiest jeans. They are usually the oldest and softest, bearing rips, patches, paint and other scars that hold memories and reminders that life is an adventurous journey. They are best worn with slippers and accompanied by a good book and a warm drink. We seldom wear these in public, especially if we are meeting people   for the first time. First impressions are important, but are only a glimpse of a person’s whole life journey. They can be misleading at times. So, my spaghetti brain (every thought touches every other thought) related this to how relaxing it is to be with people who don’t appear perfect.  Perfection has its place in the beauty of music, fashion, sports and mathematics, but it is a bit unhelpful in relationships.  This got me thinking about the strength of being real with our weaknesses.

“My power is made perfect in your weakness”- God himself.

Just as love conquers strife and forgiveness is sweeter than revenge, so is vulnerability a key to strength.
I have learned that being open with my weaknesses allows an opportunity for others to feel strong and, asking for appropriate help empowers me. No matter how hard, I tried to be independent; it was only when I admitted my need for help and got the skills to cope with my vision struggles, than I found real independence. Thanks to the professionals, at Helen Keller Low vision services, I got the freedom to move around independently even on public transport.

Asking for help takes courage as it can seem that we have failed. I know that family members can feel frustrated when they see us struggling, as they know that if we just asked for help then everyone is happier. I get that we need to be determined and persevering, but, if we don’t acknowledge our weakness, the frustration can easily become anger (at ourselves) or even aggression. Asking for help is not a failure. Being honest with our pain is helpful for everyone.

It cannot be easy to live with a person who appears to have ‘no need for help –no weaknesses‘. Hats off to all friends and relations of super- strong, perfect people. If a person is so independent and self –sufficient, without a gap, then how do you love them?  Softness can triumph over perfection as it opens an opportunity to value others and transact with humility, kindness and appreciation.

In the process of embracing my blips and blemishes and it is no easy process (especially for an A type personality), I have become less stressed and, in a way, more able. I am more comfortable in the worn jeans of my inability which opens up opportunity to ask for help and make someone else feel trusted and valuable. It’s a bit like letting an acquaintance come into your house through the back door and asking them to turn the kettle on. It makes them feel like family.

chair 2

For me, old jeans are an allegory of a life of loss, laughter and love… far more satisfying than clean-cut lines of pristine perfection. I love them so much that I restored an old wing back chair with the family’s old jeans and it is my favourite place to sit with a cup of tea, snuggled by the life journeys of my loved ones …and the scratchings of our naughty kitty!

‘Let the weak say I am strong’

(Thanks to Botha and Budler editors)

About time

clock reflectionThis morning I was late for a commitment. I was meant to be there at 7.45am. I was up early and thought that I was on time, so when my husband said, “It’s 7:35 I realised I needed to shower, wash and dry my hair, dress and be there in 10 minutes …. not going to happen.

Being a teacher at heart I was pondering my mistake whilst brushing my teeth at breakneck speed. It was then that I realised I was gauging my routine by my husband’s normal schedule. . He usually leaves at 7.25 and this morning his responsibilities were different and so his routine was not usual.

In the seconds between brushing and rinsing my mouth I realised that I hardly ever look at a clock. I judge time by other indicators.

I love revelatory thoughts, but they seem to pop up in the most inopportune times. Whilst multi-tasking the rest of my own beautifications at high speed I thought about the time clues that lurk in the backyard of my brain.

The geyser turned on …it’s half past four.

The Cape Robin is performing his entire repertoire of songs…the sun is rising soon.

The bus turned down our Street…it’s ten past seven. #

Our   neighbour is reversing out of his garage …it’s 7.30

I hear builders next door …it’s 7.45

The dog’s next door are going nuts…the children have just left for school …it’s 7.50 am

I can hear children playing in a playground…it is 10.15am

On Thursday the domestic service has arrived next door…it’s nearly lunchtime

The cat is meandering around my feet …its 5 pm.

On Tuesday nights the crowds at the sports club stop shouting…it’s 9.30

Using other people’s routines to keep my own appointments is not really the most accurate indicator of time. It is quite alarming

…I should have set mine!

Laughing at life

thinking

After eating lunch I was looking for the red lid of the Bovril and inadvertently started to pick up the last slice of red tomato you have to laugh!

I cannot decide if it is heart breaking or humorous to take a jibe at our weaknesses.  Sometimes the silly side is really refreshing.

So…

What is worse than a blind joke?
A lame one

What did they call the silo  filled with  eye balls?
The eye full tower

Why did the blind teacher resign?
He had no pupils

A blind man walked into a bar? What did he order?
Cane

A blind man walked into a bar ….ouch!

Why was the blind comedian rewarded?
His jokes were cornea.

What apparatus depicts the highs and lows of losing your vision?
A see sore

New technology for eye protection?
The iPad

What did the ophthalmic surgeons use to remove the eyeball?
A socket spanner

Why was the eyelid scolded for bad language?
He couldn’t blinkety – blink sit still.

I am legally blind… I didn’t know it could be illegal!!?

Advice for a low vision sufferer: “ it is hard to recognise people at first ….
but you’ll get a feel for it”

What source of energy do short sighted people use?
a magni-fire

Sight loss is never funny, but we might as well laugh … and occasionally  find a safe place to cry.

Let’s face it

Vision loss is a tough companion to learn to live with. It means that as your vision changes, your relationship with yourself and others needs to adapt too.

Recently my father-in-law relocated to eternity and so , we had a rare  opportunity to get together as an extended family and close friends to celebrate his  well-lived  life and to rejoice in the hope  of the next generation of Webster’s and co. It was a sad happy time reconnecting with loved ones from around the world.  Somehow, if you don’t see each other often the changes you see in each other seem quite dramatic.  The little chaps are now big bruisers and us ‘young marrieds’ are now the ‘old marrieds’. It was in meeting old family and mew additions that I realised how my eyesight has deteriorated since our last meeting.

The family also noticed the changes in me as I now use a mobility cane, can’t collect the glasses off the table after dinner and am no longer the scrabble champJ , but what hit me ‘in the face’ was not a low branch over a walk way, but was that I could not see expressions on faces at all. In a social environment this is a big deal.  I was disappointed that I could not easily understand or gauge who these new loved ones were. Not able to look across a room and smile or nod in greeting etc.  The up side is that I just tried to spend a little time with each one, so that I had a reference for relating.

On our return I went to the Low vision support group where we spoke about  the obstacles around communicating without the feedback of facial expression. And, something I had never thought of …what is my face doing when I talk? I can’t even see my own face in the mirror (which may be a relief for my middle aged wrinkles) .  Also, eye contact is an important portal for social intimacy, as we can communicate through just looking. Children can gain confidence and trust through meaningful glances and encouraging smiles. Reflecting on our family gathering   I really felt like I was missing a channel of communication especially with the kids.

Being two-faced is always a problem, but being no -faced is exceptionally tricky. I find it difficult to aim my nose at people’s faces because they disappear in my central vision and, because my eyes look normal, they think I am seeing them …or think I am maybe high on something!!! It must be a bit weird looking onto eyes that aren’t actually looking back at you.

On discussing this with a mentor she told me that 7% of our communication is relayed through the actual words, 38% of our communication is transmitted through the tone or how we say it and 55% is related through facial expression and body language. Visual impairment thus greatly affects communication and places added hurdles in the way of easy social interaction.

I am very aware of body language and it is easier to see people in winter because clothes usually provide a good colour contrast. I see clothes moving about  and  as long as folk keep their heads above their shoulders, I can aim my nose for the designated  spot. When I see sleeves swinging about, there is generally an animated conversation on the go.

When I am talking to someone and they become still, I can’t always gauge how they are responding. I love it when sounds come out …”sjoe”or,” wow”….or,” hee hee”….or,” aaagh”  ! It is an expressive clue to their facial expression.

I am so grateful for my family and friends who are available for encouragement and help in all social contexts. I don’t know if you realise it, but you ‘smile’ at me by a squeeze from a hand, a touch on the shoulder or a friendly bump on the elbow. My smile-voice is usually loud, slightly over expressive and accompanied by touch.

Let’s face it …vision loss is tough, but love is tougher.